BARRY’S JOURNEY No. 28

Spring update

Barry seems to be holding his own these days. He used to spend a lot of time in bed, which was a way to keep him from wandering around his floor and getting into trouble. For a long time, he could not figure out how to get up and out of bed. It really bothered me that his life consisted of just lying on the bed, staring at the wall. But lately he can get up by himself. His brain finally figured it out again. Now I find random things in his room that he has picked up
as he rambles around.

What is unnerving for everyone on his floor is that he walks straight at something or someone until very last minute when he pivots around whatever is in front of him. He appears to be looking straight ahead and misses things much lower than he seems to be looking — like other residents in wheelchairs. These people always look terrified until Barry walks around them at the very last minute.

Wild eyes

Barry still echoes most of what I say. But last week, he has actually asked me a question: “Did you bring me a beer?” A few days ago he said, “I am looking at your eyes.” I said, “What do you think about my eyes?” He said, “I think they are crazy! You have wild eyes!” Strange conversation but, what the heck, I’ll take it!

My friend Elaine wanted to visit Barry last week while she was in town. Earlier in the day, I had my picture taken by a photographer named Craig who used to have his studio in the same building where Barry had an office more than 35 years ago. I still had makeup on from the photo session when Elaine and I entered Barry’s room. It is unusual for me to wear makeup. I said, “Barry I just got my picture taken by a guy you used to know named Craig.” Without skipping a beat, Barry asked, “Craig Perman?” He pulled Craig’s last name out of his brain even though he hasn’t seen him for at least 35 years. Frontotemperal dementia (FTD) is so strange!

Later during that visit, Barry teared-up, but he couldn’t tell us why. At the time, we were talking about how much he used to love drinking coffee out of the ceramic mugs Elaine designs and makes. Did it make him sad to remember such a simple part of the life he once had? Should I bring his favorite mug to the care center? But he can’t drink or eat anything on his own so the mug would just disappear. It bothers me so much when he looks sad and can’t tell me what he is feeling. This is one of the most frustrating parts about FTD. But maybe he isn’t feeling sad at all.

How to bug a guy

A few days later, I came to feed Barry his lunch. It was Easter and an especially depressing day at the care center. Liquified ham is not very appetizing! The radio was on and the husband of one patient was singing along to an old song he knew from World War II. Barry started to echo some of the words in the song. One patient who can’t stand Barry yelled, “Shut up McCool!” So Barry repeated, “Shut up McCool!” The guy yelled back, “Shut the fuck up McCool!” Which, of course, Barry repeated. So the guy said, “You’re an asshole McCool!” Which Barry repeated until I said, “Happy Easter!” Then Barry repeated that greeting until lunch was over. But as we left the dining area, Barry quietly repeated the bothering guy’s name over and over again – and that got the guy all mad again. Sometimes I wonder if Barry just is trying to bug this guy!  I have to admit that I secretly love it when Barry does this! After all, I am the gal with crazy eyes! We make quite a team!